Our Diagnosis Story

January 11, 2012By 23 Comments

We Diabetes parents and patients tend to tell our “war stories” when together, and the one that resonates most is always the diagnosis story. I’ve decided to share ours today. Feel free to share yours as well.

I never sent my kids to pre-school. Or, as I learned to say after suffering the wrath of well-intentioned moms on the playground after my first child did not go (“She’ll never catch up! You’ve put her at such a disadvantage!”), I like to say, “I home-school pre-schooled.”

My reasons were varied. I worked in a home office but had an amazing nanny – almost Mary Poppin’s-like. I could not imagine a pre-school teacher being more connected to my kids or more educational. We lived in a very “neighborhoody” neighborhood, so playmates were never an issue. I could color and paste at home. Pre-school was expensive. They were already in dance and art class and swim lessons and more.

In any case, like my first child, my second never went to a day of school until Kindergarten. All went well for the first child. But with the second one, the trouble started right away.

A week before school started, she wet her bed. Then she did it again. And again. A week into school she was insolent, cranky and ill behaved. Her teacher – who knew me well since I was the school PTO president – pulled me aside one day and said, “I think she really does not like school. She keeps making up reasons to leave the classroom. The water fountain. The restroom. It’s endless.”

At the sidelines of her big sister’s soccer game, my youngest was so out of control I actually felt like I was going to deck her. A friend stepped in. “I have to run to the store,” Alice said, in the voice only a mother-of-five can muster to calm things the heck down. “Why don’t I take Lauren along with me?”

I was more than ready to let her go. While she was gone, I glanced out at the soccer game. But my mind was on my kindergartener. When had she turned “bad?” How had she somehow gone from delightful child to train wreck? And then I dawned on me.

I should have sent her to pre-school.

 Those playground critics were right. She was ill prepared. I’d failed her. The bed-wetting, the whining, the misbehavior were all a direct product of my error. And now, she was never going to catch up. That was Saturday. I made a note to bring it up at her annual check up, scheduled for the following Tuesday.

The photo was taken three days before Lauren's diagnosis. When it came home six weeks later, I was astounded I could have missed how sick she truly was.

Tuesday came and I picked her up from kindergarten and dismissed her big sister from grade school to zip them off to their annual check ups. A cassette was in, playing “Baby Beluga,” but my older daughter asked to pop in our family favorite, the B 52’s “Cosmic Thing” (my kids loved to chant along with Fred “Here come the girls!”) We all drifted off into our own worlds during the 20-minute drive.

My first born, Leigh, was singing along with every word and looking out as the marshlands of our area passed by. My youngest, Lauren, was out cold. And I was in a panic. Suddenly I realized: I’d been going to the pediatrician for 10 years now and barely ever had a question. Today, I had dozens. As I drove along I realized: something was dreadfully wrong.

Dreadfully.

When we got to the pedi’s office I roused Lauren, barely able to get her out of the car and inside the office. At check in I said, “We’re here for our annual checks ups, but I think something’s wrong.” I listed off a few concerns, and the nurse at the desk stood up and waved another nurse over.

“Do you think she can give you a urine sample,” she said, motioning toward my daughter. Now pee was one thing I knew she had plenty of.

We ducked into the little restroom where you do such things. I helped her hold the cup and she peed away. I lifted it up to the little “door in the wall” where you put such things and it just looked weird. For some reason, I felt sick. But I didn’t know why.

We stepped out of the room and around the corner. Within 30 seconds, there was a line of nurses and doctors standing, looking at us. One of them – I only remem ber it was a female voice – said, “What do you know about diabetes.”

Diabetes. Jesus. That was it.

“I know . . .. “ I choked out, almost screaming, “I know my daughter has it.”

And that was it. The moment it all changed. The moment diabetes came into our lives. The moment I switched from working mom of two cute girls to working mom of two cute girls who also happens to be kind of a full-time nurse and researcher and fundraiser and worrier.

I’ll be honest, I didn’t transition gracefully. I sobbed so hard that the doctor ran to get the lead doctor of the practice, whom I’d known since I was a child. At one point, I tried to just run away. Without my kids. I was completely out of my mind.

But by the time they got us to Children’s Hospital in Boston and shoved an IV line into my little girl to bring her back to life (after saying to her, right off, “You know that everything you’ve been going through lately – the bed wetting, the grouchy behavior, all of it – is not your fault, right?”), I was transforming. Rubbing a stuffed turtle against my  daughter’s cheek (I’d demanded my husband RUN to the gift shop and get ANYTHING soothing and that was what he found), I vowed to her – and to myself – to make this work.

“It’s going to be okay,” I said as much to myself as I did to her. “We can do this. Mom’s right here with you.” And then, in my best Fred Schneider B-52 voice I sang,  Here come the girls.”

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  1. Jennifer Murphy says:

    Great Blog! When Allyson was dx with diabetes it was March of 2nd grade in March of 2003. Just before the diagnosis I remember she would not get on the school bus anymore- she would cry and I would have to physically help her get on the bus. I was baffled by it and didn’t understand why shy was so whiny and grouchy. She said none of the kids were being mean to her or anything but nothing else came out of it. Allyson had been bedwetting for some time but her older sister was a bedwetter at that age so It didnt really concern me. She used goodnights and would wet through those to the mattress. THe weekend of March 22-23rd we were on a mother daughter sleepover with girl scouts- she wet through the goodnights almost immediately and then I knew something was wrong and took her to the pediatricians the next day. The doctor who was there at the time
    ( whom I never cared for) was trying to say Allyson put water in the cup because it was clear. I made her go again with the door open and said its urine I watched her go. THe idiot doctor then got down on her level and said Im sorry Kassandra for saying it was water- I was like her name is Allyson. Anyways we were sent to Brockton Hospital for bloodwork and exactly an hr later the doctor called back saying Allyson has a blood sugar level of 778 and Childrens Hospital in Boston is expecting you. My dad had driven us to get the bloodwork and ped appt and he said she looks like she has lost weight- she had but I hadnt seen it. Allyson would fall asleep so early at night ususally on the living room floor watching tv- I atrributed to the fact she had been anemic when she was younger and thought it could be that or that she was just tired. Now it has been almost 9 years for her having diabetes. She is now 17 years old and has been through a lot lately with her diabetes and hoping things get better for her!

    • moiracmcc says:

      Jen — exactly! It looked just like water. That freaked me out. And if I recall — soon after — we met and became friends. I look forward to better days for Allie and you. Hugs.

    • moiracmcc says:

      I a proud of you too Bridget! Stories like yours are too common. It’s good to get the word out: the stomach flu might not be the stomach flu! I never would have know prior.

  2. Krista Middleton says:

    Stories of us kids and our diagnoses’ bring me to tears everytime. Here is my story.

    I was born on November 18, 1983 in Ottawa, Ontario, Canada.

    In September 1985 I was a 21 month old toddler sleeping in my crib. My parents awoke to the sound of what they describe as “a hurt animal in the wild.” We didn’t have any pets, and I was the only person in the house other than them so it must be the baby they thought. It was. Mom and Dad said I sounded like a sick animal moaning and crying in my sleep, in the middle of the night. They rushed me to the emergency room at CHEO (the kids hospital in Ottawa) where Doctor’s begin doing test after test. I was sweaty, diapers were soaked in urine faster than they usually filled up, barely conscious, and quite unresponsive. Dad started doing research of his own and suggested to the Doctor that I be tested for diabetes. The Doctor asked if our family had a history of diabetes and my Dad said no. So naturally the Doctor said that is not what was wrong and continued doing his own tests of what he thought was the issue.

    Let me take a step back for a moment…I was recovering from Pneumonia. Is this relevant? Yes and no. I’ll explain in a few minutes.

    As the story goes, a children’s specialist from India came to the hospital a few days later to see how the hospital worked and she was sent into my room. The Doctor did not speak English but had a translator. Her translator informed my parents that her brother had been a victim of the recent plane crash that killed all the passengers (Air India Flight 182 I believe it was). This is the extent of information we know about this Doctor. No I lied, we also know that she diagnosed me, on the spot, as a Type 1 Diabetic.

    It was my Nanny’s birthday too…the day they diagnosed me. What a present, huh?

    Within the next few days my parents were taught how to take my blood sugar levels, administer and draw up insulin, and signs to look for (for high and low blood sugars). They still used oranges to teach my parents how to give injections back then…from posts I’ve seen on other people’s wall they still use that technique! My mom is TERRIFIED of blood so when she would give me my needles, it was always in my behind…with her eyes closed. She did it though, pretty proud of that girl!

    Back to the pneumonia. The doctors said that my pneumonia had mutated to diabetes. I grew up believing that. So that’s my story. I got diabetes from Pneumonia.t

  3. Katie says:

    The one thing everyone will probably have in common is the fact that for a few weeks things were obviously WRONG, but it didn’t add up until the moment we took them to the doctor, ended up in the ER, or realized…OH!

    We went to Sun Valley for a family ski trip in December. Driving through Nevada our son had to stop at EVERY rest stop or gas station to pee. And buy more soda or water. He was modest at the time and would NOT use the side of the road, even though you could see in both directions for miles and we were often the only car in sight. So, we used some pretty exotic restrooms…including the one at a business for which Nevada is famously tolerant. Our son noticed that it was quite fancy, pink, and had vending machines for many things. the woman in the tiny convenience store out front was pretty nice about directing us to the private bathroom the girls used. ;-)

    He continued to feel ill while skiing, and, the pictures showed us later, turn grayer and grayer in complexion, and get thinner and thinner over the holiday. This kept up…eternal peeing, night and day (but no bed-wetting, probably since he was 10 and woke up) drinking, eating, losing weight, and finally feeling terribly ill and nauseated.

    In our case, our son’s older brother, who was 21 at the time, said at one point…”Maybe he has diabetes” That was either right before I made the appointment wt the pediatrician, or on that morning. So, even though I thought he had flu, I did ask that they check his blood. And they took blood, but sent us home. As usual, since for us a drive to the pediatrician was a 55 mile trip, one way, we stopped at Baskin-Robbins on the way home and got ice cream.

    This was before cell phones everywhere. So, we got home to a message on our answering machine. “I have made an appointment for you and your son in Fresno (90 miles) for 8:00 AM tomorrow morning. Please do not give him anything containing sugars until then. Keep an eye on him tonight. His blood glucose was 800″

    Off we went. Spent the day with Dr. Mary Simon, our wonderful endo for the next 10+ years. Did it all in one day at the office. Didn’t cry. Went into the sort of calm auto-pilot I had when my mother was dying of acute leukemia. We learned to count carbs, calculate insulin dosage, give an orange a shot (our son learned too) give a person a shot (he practiced on us, and we did, on ourselves) – test blood with a meter… the whole thing. Our son began to feel better within an hour of his first injection of insulin, And Dr Simon stayed late for us. Then we left, promising to call at least twice a day and come back in a week.

    No hospital.No tears (then). No panic. It was an odd thing – autopilot gods, I thank you. We just coped. We had a wonderful, caring endo, who has Type I herself. It really helped us to be calm. Our son isn’t predisposed to DKA (though I think he had it once, in college). The first week was scary, since it had him feeling low a lot when his BG began to drop And this was in the days of NPH and R – the devil combination. He cried once in those first few weeks. I didn’t, because I wanted to be strong so he wouldn’t be as scared.

    Since then, I’ve cried many times. And, he probably has too. But the thing that upsets me the most is how he had all the symptoms, for a month, before we realized how wrong something was.

    • moiracmcc says:

      Katie, first LOL on the Brothel! OMG. It’s good to laugh.

      As for being calm — kudos. Two weeks later when we went back to the pedi for flu shot the pedi who has known me all my life (even when I was the top student and athlete) said “It was great — now i know you are not perfect!” LOL

  4. krisfitz says:

    Diagnosis stories always bring tears to my eyes as well – the stories are so similar (often), it’s hard not to. Thanks for sharing it.

  5. Our Dx story resulted in Cliffy being in DKA and unconscious for almost a day. The week prior he had what I thought was the flu, he got sick a few times, and just wanted to lay around and watch cartoons. He drank water like crazy as that was the only thing I could really keep in him. I remember going to the store and he got sick all over himself (before I thought he had the flu), I bought him new clothes to change him into, to this day I despise those clothes, he still has them and they still fit and when I see the sweatshirt and pants I just remember that day. I bought him a new toy gun that day also and he wanted nothing to do with it at all. Which now looking back was unusual for him, he was weak, didn’t really want to get up to walk, lost quite a bit of weight. I thought this whole time it was the flu, I even called his doctor told them the symptoms and they said it was viral without even seeing him. He went on visitation with his dad, and he acted more lethargic and wouldn’t move and only wanted to sleep. His dad took him to the ER where they found his bg# to be over 600+. He was transported to Children’s where Chad and I came as quick as we could. He was unconscious for almost a day. I just remember the doctors staring at me asking why I hadn’t gotten him in sooner, and I explained about the flu and calling his doctor, and I just felt like they were blaming me for it all. I know his dad blamed me, but that’s a whole different story. After a day on an IV drip and insulin he came too and looked much better and more full of life. We are about to hit our 2 year dx at the end of February and I still think back to that day, and am proud at how far we have come, but there is still so much we need to learn.

  6. Katie says:

    We ALL thought it was something else at first. And we all blamed ourselves at some point. Look at my story – even the pediatrician thought it was the flu, in his office! It’s the photos later that show us how sick they were.

  7. Laura Ricci says:

    It’s coming up on 5 years, January 28th, 2007. My husband had gotten laid off in Nov. 2006. My son was drinking and peeing and we were like – hey, look, he’s drinking! We could never get him to drink water. He never gave any signs that he was sick. On this day, he came home from school and crashed on the couch. It was odd. He was always so lively, barely ever sick. He was breathing weird, like hyperventalating. He was a little unresponsive. I called the doctor and they said to call an ambulance and take him to Clinton Hospital. I said I could get him there faster than an ambulance could. I told them to call the hospital and tell them we were coming. Most of this is a blur to me afterwards because I have my own health problems and was having seizures. They transported us to Children’s in Boston and there we sat for a week. His blood sugar was over 400 and he was in DKA and had strep throat, he never threw up. I barely remember learning how to calculate the blood sugars and the teaching we had to go through. I remember sleeping on the horrible window seats in the hospital. I know I wasn’t sleeping well and I was seizing due to lack of sleep and stress. We came home after a week and made a huge chart (that’s still on my kitchen wall) with all the directions about what to do with the NPH and Humalog. Today when he’s high he never has ketones, has barely been sick except for an occasional cold, is on the pump, in puberty, playing sports, and for the most part doing well. Now I’ve got my own group on Facebook and helping teach all the newbies about what I don’t remember being taught.

    • moiracmcc says:

      Laura those window seat beds! who could sleep on them?? That said I remember when it was finally time to go home being so scared I said “Oh no we are fine. We’ll just stay here!

  8. Jill Geisendorfer says:

    Our story is a little different. My husband took Max to the pediatrician for his four year old check up a couple of days after his birthday. I was working full time back then so I didn’t go. I remember Jim called me afterwards annoyed because they told him they had spilled Max’s urine sample, could he please try to make him pee again. In retrospect, I’m sure it’s that they found glucose and wanted to confirm it.

    So the next day, Jim got a call that said it looked like Max had “glucose intolerance”. They had us check his blood sugar on my father-in-law’s tester. We all trooped over to their house with Jim’s aunt, who is a PA. She poked Max right in the middle of his finger pad which hurt him like hell but the result was 86. Grandma immediately gave him a bottle of Kool Aid to drink and I remember thinking, this ain’t over and that’s probably not the best idea. The pediatrician recommended that we test him a few more times over the weekend to be sure.

    Because of the nasty first poke, we were reduced to having to wrestle him in order to poke his toes! He refused to let us do his fingers anymore. One of his morning tests was a 41. I remember laughing it off and my husband said to him, “you must be hungry!”

    After one particularly difficult episode of getting a blood sample, it came back 240. We were newly on the internet back then and I spent hours looking and looking for information on diabetes. Everything I read said that any blood test anytime over a 200 meant you had it. I kept looking for the asterisk that would say, “but not your kid”.

    Max was admitted to Children’s Hospital of Buffalo on Monday morning, June 30, 1997. We had a wonderful nurse educator who had T1 herself. She told him, “You can’t cry about this. (finger pokes) You have to do this for the rest of your life.”. And he didn’t. Previous to that, I had been crying pretty much nonstop for about a day and a half and I tried to listen to her, too.

    Max’s college admissions essay was about how he wouldn’t change getting diabetes, it made him who he is. Don’t get me wrong, he wouldn’t turn down a cure. His diagnosis changed me, too. I used to prefer staying in the background. This diagnosis doesn’t really allow for that. Now I love the work that I do volunteering for JDRF, I love the people I work with and we are going to beat this thing.

    • moiracmcc says:

      Jill the other thing I would not change is the people I’ve gotten to know through all this — like you. I had a looonggg catch up chat with Michelle Crouse on the phone today. One of my fave people on the planet. Maybe we would have met at a Springsteen concert but maybe not — I’m just glad to have the friends I have through this. That said it would be nice to put it behind us! (and have our grandchildren just meet for FUN not fundraising)

  9. Maureen says:

    I spent all summer that year accusing my 12-year old daughter of beign surly. As they were wheeling a semi-conscious newly diagnosed Samantha away on the gurney at Childrens Hospital she lifted her head and said “see, I told you I wasn’t surly!”

  10. Bridget Zaeske says:

    Unfortunately, I have two stories. Mine, more dramatic and scary, my daughter’s, more heartbreaking (at least to me).
    I was diagnosed a week after my 13th birthday. My mother says she was worried about how tired I was all the time. I was eating and drinking and peeing 24/7. I honestly don’t remember much of the weeks leading up to my diagnosis. My mother took me shopping to spend my birthday money and was shocked at how thin I looked and what size the brand new clothes that I had chosen were (2 sizes smaller than my usual). A day or so later, I was SICK. My mom took care of me as she always did. Getting me whatever I needed, giving me love. Also, unknowingly, giving the very things that were making me so ill. I asked for a milkshake, I got it; anything to get something in me that I might keep down. At some point in the vomiting, I told her I needed to go to the hospital. She had already called my doctor and they had told her if I wasn’t better by the morning to bring me in. She didn’t wait, thank God! My parents drove fast as they could to Children’s. The last thing I do remember was the lights in the hall of the ER and doctors and nurses everywhere. My bloodsugar was in the 600s. I was in a diabetic coma for several days. I remember nothing. When I came to, I was told what was happening to my body. My mom told me later that when they walked into the ER with me, the doctor put me on a bed immediately and asked ” How long has this child had diabetes?” What a way to be told your child has this condition!!! I am thankful everyday that my mom listened to me when I said that I needed to go to the hospital.
    My daughter was lucky (if you want to see it that way). I was always on the alert for the symptoms. Always, everyday. I would check their blood sugar when they slept if they had a bug. I watched their energy levels, etc. I knew the signs, and I wasn’t going to let down my guard. She was in the first grade, we had gone on a family outing and she kept asking to go to the bathroom. Of course, at first we think “Wow! She is so funny, needs to check out all the bathrooms!” After the 4th bathroom, I was worried. My husband and I decided that we would check her bloodsugar as soon as we got home. She was in the high 200s. I called her doctor and we brought her in to Children’s. She handleded it like a pro, maybe it helped that she had seen me do this all of her life. I was a wreck! The guilt swallowed me. I gave this to her. It took a while, but I realized that blaming myself wasn’t going to change anything.
    Thank you for sharing your story and thank you for letting me share mine and my daughter’s. God bless everyone living with T1, and the researchers trying to find a cure! I pray one will come in my daughter’s lifetime!

  11. Anne says:

    Here is what I recall about Laurens diagnosis. It was my turn to drive to dance class, and when I pulled into your driveway, Lauren didn’t come out as usual. I went to your door, and Nana Louise said she couldn’t wake Lauren up, she was so sleepy. Weird? She said she was fine, just really tired. I called you later and asked if Lauren was sick, you said no, but I believe her check up was the very next day, and you said you were glad you were going because Lauren seemed tired or some thing like that. I can remember taking the girls to Friendlys a few days before that, and Lauren went to the bathroom like 6 times while we were there. I never for one second thought of diabetes! I wish I was smarter! When we found out about Lauren, I was talking to the kindergarten teacher, and she felt bad for not catching on, she said Lauren was constantly going to the water fountain and drinking. when you brought her home I remember you trying to get her excited about how she could eat ALL the sugar free jello she wanted! Whoopie! Fast forward about 10 years and my son is thirsty and peeing and sick for a whole week. I said to myself, he takes allergy meds, they make him thirsty, we had a stomach bug in the house, that why he’s sick. At the end of this awful week, Jeff is standing at the sink drinking water, and I put my hand on the back of his neck, and it felt so thin, it felt different under my hand. I felt a chill through my whole body at this moment. I took him the next morning and he was diagnosed at the pediatricians office. My pediatrician, who I knew for 18 years, gave me a hug, put me in his office with his phone and said, call who you have to, you are going to Childrens right now. At the hospital people kept saying wow, how did you know so quickly? Thanks for all your help Lauren and Moira, love you guys <3

  12. Jules says:

    that made me cry….I’m sorry. Love you.

  13. victoria says:

    I have a horrible memory and can only remember bits and pieces of my childhood — usually only when prompted. I was 11 at my diagnosis, and I remember the entire day clear as a bell. Sucks.

  14. Our story is likely not as dramatic as some of the ones I have just read. Diabetes is rampant in my husband’s family and something in me knew all along one (our only one) would have diabetes. I am a bit of a control freak who likes research, so I was as prepared as one could be. Kaleigh was 18 months old and not big on drinking. All of a sudden she was waking up in the middle of the night asking for juice (in sign language as she wasn’t yet speaking in sentences). She would ask for apple juice and sign “more”. I remember picking her up from my Mom’s after work and her having a diaper that weighed a ton and my Mom saying we just changed her. Ok, either I had a bad Mom (not likely) or something was wrong. Kaleigh was listless too, just not interested and she looked thin to me. Like you Moira, we had a regularly scheduled “well” appointment. I remember calling my Mom that morning and saying Kaleigh has diabetes, she said no you’re crazy, it is just the flu or something. We went to our pediatrician (first appointment I went without my husband) and they weighed her and she had not gained any weight since her 12 month appointment. They weighed her on 3 scales, just to be sure. When the doctor came in, he asked me what was going on and I said, you need to check her for diabetes. He said why. I said she has not gained any weight. He started down the “failure to thrive” road and I stopped him and said just listen, she is drinking and wetting like never before, she is listless and just not herself. He agreed to send her for bloodwork, and I of course pushed. If you had to treat her blindly, would you treat her for diabetes and he answered yes. Signal, waterworks. I knew and I still lost it. To the point the nurse asked if there was someone they could call. No, my husband will meet me at the hospital. Bloodwork done, call 2 hours later and it was confirmed, I had a daughter with diabetes. We made a trip that night to the endocronologist and every day for two weeks after that. Why are we lucky, we had a pediatrician who listened to me and Kaleigh was NEVER hospitalized, her blood sugar when we found it was 469. We went through every stage of grief even though we knew this could happen and deep down, knew it would happen. We struggled for support from family and friends and work. All came through and we have a daughter who is likely more “normal” than either of us. The pain and grief is gone, but never forgotten…we thank our lucky starts everyday for Kaleigh.

    • moiracmcc says:

      And of course, Lisa, I remember (weeks or a few months?) after that. I was at the Stop and Shop and noticed a little girl with a medic alert braclett shopping with her dad. I tried not to be TOO obvious when I zoomed in on the wording and it said “Diabetes.” I ask forgiveness for my nosiness — this was before the days of blogs and facebook and good internet to hook us up, right?? I said to the Dad, “I’m sorry to be nosy but I have a child with diabetes — is that a medic alert for diabetes?” And of course it was. Kaleigh was so cute (and still is!) I think of that day often when I’m in Stop and Shop! You guys have done so well with all of this.

      • Yes Maura and you were likely the only connection we had to diabetes today. We had family with diabetes but their experience was outdated and approached with a different attitude. You ( and Lauren) gave us hope that life could be normal. Thanks for that.

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